I had a Telehealth video meeting with a Radio Oncologist yesterday at the suggestion from my Oncologist. What I learnt from the RO, was that chemo is used primarily to kill the microscopic cancer cells which are moving around my body. This hopefully will prevent other tumours from forming in other organs and structures. Whereas Radiation treatment is used to kill the known cancer tumours. For me that's in my Prostrate, Bladder and Pelvis.
The realisation for me is that ADT and chemotherapy were never likely going to kill the existing tumours and that Radiation should have been discussed with me as a recommended part of my overall treatment plan. Probably a discussion on the Stampede trial would have been appropriate. Not as an option off handily thrown at me as, "you could try radio therapy if you like" by the Oncologist when the PSMA PET scan results revealed the Chemo and ADT had only shrunk the tumours by a little over half.
As has been discussed on this forum in other posts, we need to keep ourselves informed on our treatment options and engage with our specialists about those options. My APCa journey has only been going now for eight months and thanks to this forum, I have learnt a lot and this has benefited me greatly.
One thing for me is clear. My Oncologist thought the Chemo and ADT would be all I would need to beat this beast. And while it smashed my PSA, 50 at Dx in Dec 2019 now down to 0.05, it has not killed the existing tumours. Oncologists like drugs, Radio Oncologists like radiation and Urologists like surgery, it's up to us to bring them all together to manage our own health treatment plans. We are in effect our own Project Managers.
Keep up the fight, 😎DD.
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Has anyone done Radio Frequency Thermal Ablation of the nostril?
Thanks for this post, D.D. I'm just in the throes of trying to decide whether radiotherapy to the prostate only is a worthwhile addition to my current ADT + Erleada which got me down from 114 PSA to (so far) 0.2. I'm assuming I'll be below 0.1 by the end of August if all goes well.
I haven't ready access to the PSMA-PET scans, but assume I'd be in the same boat as you if I added chemo first. The radiation that the RO has in mind is the VMAT version of IMRT with 55 Gy given over 20 consecutive days at 2.5 Gy/day. In other words, a "mild" dose focused specifically on the prostate. I'm just afraid of creating unexpected side effects or making current ones worse since I get up to pee seven times a night and have urinary urgency during the day not to mention bowel urgency. I can handle those now but if they got worse it would affect quality of life regardless of any increase in overall survival. Plus radiation screw-ups aren't reversible like stopping a drug that's creating unexpected/unwanted side effects. Decisions, decisions!
Gday BF, I too am thinking of how I will react to the side FXs of the radiation. Its the unknown, which is somewhat of a leap of faith. But while the risks have been pointed out and as you rightly point out, when it's done its done.
For me, I don't see any other option as surgery is off the table. I have to try to kill this beast and improve my QOL. I have an ureteral stent in place which makes me pee blood all the time. The Radio Oncologist is confident this will kill the tumours and reckons I'll have a 50/50 chance of no longer needing to have the stent. Fingers crossed.
So, I'm gonna face the fear and get it done, cheers 😎 DD.
The RT can work and you’ll get the stents out . They told me the same 50/50 to survive my first years treatments of 8 wks imrt and double adt . I had bi-lateral neuphrostimy bags and a foley until finally only stents then presto change “ it worked”. I’ve been clear over four years now . I wish the same for you . Not one of us “ Wants “ radiation or chemo . But you want to live so you must proceed.. Heal yourself brother ..✌️😎
Thanks Wimpster 👍
Get it done and get back to healing .. I’m pulling for your success and to rid the pain . It will be a blessed day when both the pain and the stent be gone .🙏🏼